RECOMMENDATIONS FROM THE CENTER ON DIGNITY IN HEALTHCARE FOR PEOPLE WITH DISABILITIES

BY LAUREN AGORATUS, M.A.

Inaccessible doctor's offices? Non-adaptive medical equipment and testing? Provider bias in medical decisions?

GAPS IN HEALTHCARE

The Center for Dignity in Healthcare for People with Disabilities examined key areas in healthcare and identified the following areas of concern:

The Center conducted a literature review and gap analysis in each of these areas and issued a set of recommendations for healthcare providers, families and patients, and systems. There is also an easy read version of each set of recommendations for people with intellectual/developmental disabilities.

There are also additional recommendations specifically for disability organizations, policymakers, healthcare educators, and testing labs.

Care denials, bias, rationing, ableism regarding disability in healthcare must be addressed in order for medical care to be equitable.•

ABOUT THE AUTHOR:

Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality ForumPediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (epmagazine.com Archives June 2022).

MIND THE GAPS : ADDRESSING SYSTEMIC INEQUITIES IN HEALTHCARE

This work was conducted as part of the Center for Dignity in Healthcare for People with Disabilities. While the grant funding that effort ended, the work continues as part of the new National Center for Disability, Equity, and Intersectionality.

Recommendations to Reduce Healthcare Inequities in Mental Health & Suicide Prevention for People with Disabilities www.centerfordignity.com/mental-health-and-suicide-prevention

Health Equity Recommendations for People with Disabilities as They Age and Face End of Life centerfordignity.com/subcommittee-on-aging-end-of-life

Recommendations to Increase Access in Organ Transplantation for People with Disabilities centerfordignity.com/organ-transplantation

Recommendations for Stakeholders to Reduce Discrimination Against People with Disabilities in the Administration of Prenatal Screening/Testing centerfordignity.com/prenatal-diagnosis-subcommittee